They come in all ages.   There's boys and there's girls. They come from different regions of the U.S. They have varied interests, are learning different things in school, and their personalities are distinct. The oldest is going to be 13 years old in February and the youngest just recently celebrated one month with us. Ella, Ava, Henry and their cousins enjoyed each other's company this holiday season. They played games the old-fashioned way using board games, pieces, and strategies.  They played games the modern way using controllers, the TV, and strategies.  They ran (and wheeled) around the houses, sat at the kids' table for meals, and played carefree in the snow.  They enjoyed the dogs that surrounded them, took part in the holiday treats as they became available, and had their quiet moments (every so often).   Each adult seemed to find some time to spend with each of the children in one way or another.  Laps were sat upon, ...

Eighty years separates them, yet they speak to one another joyfully. His child and her parent are the link between them, yet there is more than just common DNA. In the background sits a piece of furniture that belonged to him for 35+ years, it sits in her house now. She sits in her modified chair and he sits in his wheelchair. They share a moment on Christmas Day...they're alone in the dining room after Christmas Brunch. Ella is surrounded by so many loving family members.  She delights in visiting with her maternal Gramma and Grandpa at their house and dances for joy when she knows that they are coming to visit her.  She loves dearly her Auntie Annie and Uncle Noah along with their newborn little girl, Caroline.  She screeches with delight at the prospect of seeing Auntie Sarah, Uncle Brad, and cousins Conner and Johnny.  Her eyes light up when Mary and her dog, Link come to visit.  Her playfulness comes out when visiting with Uncle Andy, Aunt Beth, a...

Our kids believe in Santa Claus.  Why shouldn't they?  He exists.   He lives in the hearts of those who have prayed for us. He resides in the corners of the communities that extend their collective hands to us. He takes his place in the reassuring nod or wink one of us may receive at any given moment. He falls into our lives when e-mails find their way to our computer offering encouragement. He swoops in as strangers generously give to our children. He leaves his mark when a hug is exchanged or a shoulder is leaned upon. He exists.  In so many ways.   As Christmas Day brings itself closer to us we, as a family, have been reminded that this has been quite a year...not just for Lindsay and myself, but for our children as well. Ava and Henry have struggled with the emotional waves that bombarded me and Lindsay.   They have been shuffled from one caregiver to another in a moments notice. They have been chall...

I sat on the edge of Ella's bed; the room illuminated only by the light of her bipap machine.  I just finished hooking up her feeding tube and started the overnight continuous feed.  As per usual Ella took my hand and "charged".  We sat in silence.  I pressed a button on the feeding pump to see how much has entered her body and double check the rate...10ml had gone in at a rate of 50ml per hour...perfect.  Then I noticed it.  The battery-life indicator was on yet the pump was plugged in.  I looked at the adapter on the outlet end and the little green light was not on...I adjusted some things...no luck.  I called Lindsay.  We adjusted some more but had no luck.  Ella watched us gleefully.  We ended up calling the Home Health Care...they didn't have an extra adapter available until the next day and advised we use the "gravity-bag".  We tried.  It didn't work.  We ended up doing manual feeds with a syringe througho...

Daddy, Ella, and Dr. Kuntz  The world of SMA can run emotions high and low all within a matter of minutes.  The reality of the disease, if allowed to be pondered for what it is and does, can remove you quickly from this world and hurl you into a place that is deep, dark, and full of anguish.  On the same note, the will and determination of those who suffer from it can bring you to a high place full of light and life, eliciting hope, compassion and perseverance. At Ella's quarterly multi-disciplinary appointment (Lurie Children's Hospital) we sat in the examining room waiting for Dr. Kuntz and her team.  They are extremely efficient and we are never waiting for very long.  Ella, delighting in being there as she anticipates the visitors and seeing her friend Scarlett, is busy wheeling around the room.  Lindsay and I take a moment to check our phones in an effort to stay connected to the outer world.  And there it is...an SMA reality that has...

    With each day as they grow they cling more tightly to one another in so many ways.   Ava delights in being the big sister to both Henry and Ella.  Yet Ella affords Ava that opportunity to be a big sister to a girl.  Many of the things Ava likes to do are taken up by Ella; I can see many of Ava's mannerisms in Ella.  There is definitely a bond forming. Throughout the day, of course, is the bickering, the bothering, and the annoying habits we've all come to know too well.  There are the time-outs, the scoldings, and the teaching of apologies and forgiveness.   Woven into the waking hours are moments that might melt one's heart.  The girls playing make-believe together, sharing their coloring supplies, or getting their nails painted by Mommy.  Ava takes off her "bossy" hat and puts on her "sweet" hat.  She talks with Ella and helps her to do things.  She teaches her about the world and allows Ella to explore it. ...

The bracelet above was made for a mother.  Her child, Avery, passed away due to SMA.  Like for so many children, SMA took her life quickly.  Mama Bracelets (owned by Lindsay) made a memorial bracelet for Avery's mother. The picture shows the "Cure SMA" Open Circle in the forefront with the charm that reads "Avery" in the background. Avery was diagnosed with SMA Type 1; this type is considered the most severe type of SMA and depending on the level of severity, the life of a child can, and often does, end before two years of age.  There are kids with SMA Type 1 that do beat the odds...their lives are spent with very little if no muscle function.  They are surrounded by the love and care of their families who do everything they can to keep their kids alive and happy despite SMA.  Regardless of which type a child has, SMA robs them, and their families, of so much.  Avery gained much attention during her short time on this earth.  Her parents...

When we walk in the house, she's there. Throughout the night she checks in on each one of us. When we celebrate by opening gifts she celebrates along. When a stranger comes to our house, she warns us in her unending protective nature. She knows when we are happy; she feels it when we're sad.  Her affections for us are boundless. She's our dog.  Her name is Sasa.  Sasa and Ella have developed a bond unlike any other in our family. Ella watches her eat and Sasa always returns the favor.  Ella gives her hugs and Sasa delights in them.  Ella often requests to sit with her and Sasa always makes room. It's a beautiful spectacle to witness when a young girl, confined to a wheelchair, and her lifelong companion, her dog, interact.  Ella adores Sasa with all of her heart, all of her soul...and Sasa seems to have been made for Ella. A tribute to our friend, our companion, our protector, our one-and-only...Sasa.  ...